ACCESS to high-cost drugs for rare diseases is likely to become even more difficult after the Federal Government sacked more than 20 medical experts from committees advising on which drugs should be subsidised.

The expert committees advising the Government have saved taxpayers $50 million in recent years by detailing how to cut the doses of some ultra-expensive drugs.

And because the Government negotiates capped funding deals with the pharmaceutical companies who supply the medicines under the scheme the doctors advise on, there is always budget certainty about cost.

The sackings come as part of a Government review of the Life Saving Drugs Program and the Royal Melbourne Hospital’s Professor Jeff Szer, one of the experts sacked, feared for the future of the scheme, which he said was one of the best parts of Australia’s medicine approval system.

“I think we’ll be in a situation where it will be very difficult getting anything new funded for rare diseases funded by the Government while the review is under way,” he said.

The program funds a series of high-cost medicines for 228 people with rare diseases.

Since 2010, no applications for new lifesaving treatments for rare diseases have been approved, despite multiple applications.

In fact, two high-cost medicine candidates for the LSDP — Soliris at $500,000 a patient a year and Kalydeco at $300,000 a person a year — were not considered for the scheme last year.

Instead they must meet tough conditions before they will be funded under a separate Highly Specialised Drug program.

Health Minister Peter Dutton said the review was “an opportunity to update clinical efficacy and safety data for treatments currently subsidised and incorporate new and emerging evidence”.

The disbanding of the expert advisory committees “will allow the small group of experts who work in this area to participate fully in the post-market review of the program and to advocate on behalf of their patients”, he said.

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